Monday, June 10, 2013

We've Been Busy

JFS. CBC.
TSH. T4. PPTs. 504.
IEP. ADHD. IQ. DCIS. Those are just a few of the acronyms that seem
to define our lives lately. What do they
stand for? Work and life, in a nut
shell.

I’ve been so
busy I could hardly justify sitting and updating the blog AND my Outlook email
isn’t working so I’m unable to send out my bulk email to let everyone know I’ve
finally updated the blog, which I’m just sure no one checks it anymore!So there are my big excuses for not
blogging.Unfortunately it isn’t for
lack of things to write about.

So where to
begin is my big question now . . . I guess we’ll go youngest to oldest.So let’s talk about Chloe.Once again, Chloe is being Chloe.What does that mean?Well for those of you who follow along you’ll
understand what I mean, but for those of you who are new to the blog let me
explain. . . that basically means she’s giving us drama, but in the end we’re
confident it will all work out.

First of
all, a little back story. . . back in March Chloe had to increase her thyroid
medication and while getting that lab work also got her annual CBC done which
came back slightly abnormal sending us to Yale Smillow Cancer Hospital for a
Hematology/Oncology consult. For those not
that familiar with Down syndrome, kids with Ds are at higher risk for
developing leukemia than “normal” kiddos, so an abnormal reading calls for a
manual read by a cancer specialist. So
off we went to Smillow where we were ultimately told that she is fine. . .
we’ll do occasional CBC’s if she’s getting stuck for something else so she
doesn’t have to have unnecessary blood draws.

So about 3
weeks ago Chloe collided with another child at school and had a pretty serious
nose bleed. The nurse warned me it might
bleed some more that night. Well, at
home, it was a Friday night, she had two fairly significant bleeds (I’ll spare
you the gory details, and believe me there were some). I called the doc Saturday morning and got
instructions on how to handle the bleeds and when to consider it in need of
further intervention and of course she had no more bleeds. Come Tuesday afternoon I noticed a few drops
on her shirt and some dried blood in her nose.
I wrote a note to the school and low and behold she had a 20 minute nose
bleed on Tuesday and they neglected to notify ME or the NURSE! Oops!
I don’t remember the exact timeline, but she had another big nose bleed
in the middle of the night all over her sheets and a few more medium to big
ones at home, so we took her in to see the ENT.
Didn’t appear broken, and they recommended saline spray and antibiotic
ointment in her nose to help it heal and sure enough that did the trick. Shortly thereafter I started noticing easy
bruising and red spotting type bruises that seem to appear and go away fairly
quickly. Since she was due for her
thyroid screen and they were going to stick her anyway, it seemed appropriate
to get another CBC. So here we are with
another “abnormal” CBC, in fact exactly the same as last time. They’re seeing us to do a manual count again,
which we expect to be fine and then to devise a plan on how to monitor her
going forward, including establishing a new “baseline” for her. We really aren’t too worried.

***UPDATE***Chloe waiting for her blood draw today at Hematology/Oncology where everything looks GREAT!!!!!!

Since
starting this post I have a new story to add. . . don’t worry, I’ll be
brief.After returning home from an
awesome Open Playgroup with friends Chloe was headed outside to see her daddy
and was at the top of our wooden deck stairs, when our beastly black lab mix
“puppy” barreled right past her sending her cart wheeling in a dramatic
fashion, all the way down the stairs.Stacey (her dad) and I watched helplessly.It was so dramatic my instant reaction was to
just call 911, but after sitting with her for a minute, I realized that was
unnecessary. About 20 minutes later an
atypical midday nap warranted a call to the doc, but we determined she was
fine.So aside from my bumps, bruises
and scrapes, she came out of it ok.sigh.

Sadie’s our
“stable” one (ha ha – that says a lot about our family. . . tee hee). Aside from a badly bruised ear and a swollen
cheek bone (two separate incidents), she’s been keeping me somewhat sane. Don’t get me wrong, she has her moments, like
everyone, but for the most part she’s in a REALLY good place. (knock on wood). She’s into fashion and playing with friends
and listening to music. . . and that about sums her up.

Before Xander's band concert - he plays drums!

Then there’s
Xander. Xander is a very long story,
which because of his age, I will avoid the in-depth details. Falling grades, psycho-education assessments,
and doctor appointments have led to the understanding that Xander is VERY
bright, YET has an extremely discrepant Processing Speed. There is some dispute as to whether he has a
learning disability (between our pedi and his therapist who both feel strongly
that he does and the school who does not) so we are left fighting to help
Xander be understood better and to get him the services he so desperately
needs. Aside from school Xander is
playing spring hockey and enjoys video games and hangin’ with friends.

Stacey and I
are busy busy busy. Between work and
spring duties, and getting the kids to their many appointments and coordinating
and advocating we are just trying to get through. Stacey and I survived another spring work
season, meaning he’s back to working 5-days a week instead of 6. This leaves us with a whole extra day to get
things done. WOW. I’m stressing with all
the work I’m doing and trying to coordinate the care for my kids, but I do LOVE
my job and find solace in having something that is my own outside the home,
that I feel passionate about. I am lucky
to have found such a perfect fit for me.

Nana and Xander after hockey.

Last but
certainly not least is my mom.She’s
doing really well, considering she was diagnosed with Ductal Carcinoma In Situ
(AKA -DCIS) which is a VERY treatable,
non-spreadable form of breast cancer.She has had the offending calcifications and lesion removed and will
undergo 6 weeks of radiation and then a possible follow-up treatment
afterwards, but that should be it.No
chemo and we expect a full recovery.

So I think
that covers everyone – for the most part anyway. This is what happens when I don’t update for
awhile. So much to say. . . will update
after our Hem/Oc appointment. . .

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Pray for Dillon

About Me

I am a 44-year-old woman whose life changed when I learned my third child would be born with Down syndrome. Right away I knew that our lives would be changed forever, I just never in my wildest dreams could have imagined it would be like this. This is my family's story.
In the months preceding the start of this blog, starting when Chloe was just 6 days old, she had 7 hospitalizations, 1 open-heart surgery, and 1 g-tube surgery. She was the youngest child at our hospital to ever be put on CPAP at home for Severe Obstructive Sleep Apnea. She had a TINY opening to her airway and therefore frequently suffered from upper respiratory incidents. Chloe also had GERD and was being considered for a Nissen Fundoplication. But she is an AMAZING fighter and the happiest girlI've ever known!